Abandoned by medical community

[mustangmort]

Dr. Sonnenday, how extraordinarily kind of you to chime in here. Thank you for extending a hand to folks in need.

[hpb_txp_surg]

Mayo Clinic Jacksonville has considerable experience with cholangiocarcinoma and would be the closest to you that I would recommend. Feel free to email me and discuss as well; I would be happy to review your films, as I sure would Dr Kato as mentioned above.

Chris Sonnenday
University of Michigan
csonnend@umich.edu

[tiff1496]

I agree with Kris and other. Please get to a major cancer center. Look around at all the sites and see who you like best.

I do travel to MDA. We love it there. I see Dr. Javle, he is an awesome doctor. We do fly, and have to stay in a hotel for a few days. Its totally worth it. I will travel or go anywhere to get a cure!

[pamela]

Hi ssteiners,

My daughter, Lauren is treated at University of Michigan Hospital. We are so happy with her care and the doctors there. Logistically, it would be a major hike for you to go there, but a lot of people fly to MD Anderson in Texas from all parts of the US and probably the world, so why not Michigan. I know a few people have gotten in touch with U of M and are seeing their doctors at my slight urging. Most of them were fairly close to the facility. We are 3 1/2 hours away, but wouldn’t think of going anywhere else. They have helped Lauren a lot and next week she is having a procedure called Theraspheres to help kill her small tumors in hopes of resecting her large one. When she was first diagnosed, we weren’t offered a lot of promise, but she has really surprised the doctors with how well she is doing. Her positive attitude and fighting spirit make the doctors want to help her even more. I wish you all the best in your search for the best place.

-Pam

[gavin]

Hi There,

Here are a couple of links that may be of use to you. This one has a list of some of the major treatment centres in the USA –

http://www.cholangiocarcinoma.org/majorcancercenters.htm

And here is a list of major centres and physicians that was created by the members here on the site –

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126

Hopefully some of this will be of use to you.

Best wishes,

Gavin

[kris00j]

My platelets usually are up after a couple of weeks, also, although they’ve never gotten “far” into the normal range. They stopped my chemo in Nov 2011 because of infections. Jan. scan showed tumor still shrinking so no chemo. March scan showed new growth so they put me back on chemo.
I don’t know what your doctors are thinking but they should explain their train of thought to you.
My docs are in NYC. At Sloan Kettering. Dr. Fong is my surgeon and I like and trust him. Dr. Kemeny, my onc, will never win any awards for her sparkling personality. But she’s darned good at her job or she wouldn’t be rated one of the best. There’s another patient, Jim, who went to Dr. Kato at NY Presbyterian for his resection. Dr. Kato goes where no other doctor dares to go. Maybe you can send him your discs?
Still others go to MD Anderson in Texas. Tiffany is one of them. I’m sure some will chime in.
I also was not resectable. The tumor shrank enough for my surgeon to schedule the resection, but due to infections, I missed the window. Now I wait again. My hope is for the scan on the 23rd to show I’m resectable again.

[ssteiners]

Thanks Pam. My platelets are checked every 2 weeks. They have risen from 50,000 to 87,000 thanks to Chinese Herbs and faith. I hope your daughter is doing better. Where does she get her treatment?

[pamela]

I am sure someone will recommend a major cancer center for you. Have your platelets been checked lately? In my daughter’s case, her platelets were back up after a week of rest. I would definitely get to a major cancer center quickly and start whatever treatment they suggest. It really makes me angry that you are made to feel like there is nothing more that can be done. I would certainly high tail it out of that facility. Sometimes you have to be your own advocate and find the best place for you. All the best.

-Pam

[ssteiners]

I have been under the care of oncology team without Cholangiocarcinoma expertise since 9/11 diagnosis. Two rounds of gemzar cisplatin and two rounds of radioembolization later my tumor burden is shrinking without uptake outside the liver. Markers are within points of normal range. Problem is that docs have ruled out further chemo to wait for platelets to come up. All other counts are within normal range. Also am not candidate for resection. 12 weeks post chemo and they are out of suggestions. Pretty much feel like they are putting me out to pasture.

Anyone know of centers anywhere that might help me maintain or improve current status?

[Author]

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